NDIS "It shouldn't have to be this hard"
August 08, 2019
Sam Stasinowsky decided to speak out about her experiences with the National Disability Insurance Scheme (NDIS) to help others.
Three years ago her daughter, Sophie, was born with complex congenital heart disease, requiring open heart surgery.
Complications during the surgery resulted in Sophie’s vocal chords being paralysed (causing issues with feeding, breathing, speech and sleeping) and endocarditis, a serious bacterial infection in her heart.
Watch the video of my latest speech in parliament on the NDIS.
In February, Sophie was also diagnosed with global development delay, and more recently with autism and an intellectual disability.
Sam says Sophie’s preschool and speech therapist both encouraged her to call the NDIA to ask for an access request form.
“I spent hours on the phone. NDIA staff members were adamant access request forms were not done on the phone. I had to leave my details with the service provider who told me they had a 12-week waiting list for the access request form,” Sam says.
“We started the process in February, it was so frustrating to find out in July no one had even looked at her application and the NDIA contact centre told us we had to wait two more months to be eligible to make a complaint.
“We had spent all our savings and everything we could spare each month on all the reports and therapies.
“We’d run out of money and had to cancel Sophie’s speech therapy and preschool days but managed to continue her occupational therapy,” she says.
By July Sam’s frustration was turning to despair and she contacted my office for support.
Since contacting my office and mentioning to the NDIS that she was willing to speak with the media about her experience, Sam says the NDIS is now “bending over backwards” to assist Sophie.
Sam worries that many carers, unable to pay for the therapy sessions and reports required to apply would not get access to the early intervention they need and many others have to give up employment to care for their loved ones whilst waiting for NDIS plans and services.
“It is important for people to know how hard it is,” she says.
Within 24 hours of calling my office Sam had been told Sophie’s access request was approved and offered an NDIS planning meeting with two hours’ notice.
“I don’t believe that is the normal process. I believe they have skipped steps to try and silence me,” she says.
“The part that has been hugely frustrating is that they didn’t give me the correct information or explain the steps clearly when I first called in February.
“Now I’ve received the official brochure and the first step in it says call the NDIA to complete an access request form over the phone but back in February I called two call centres and both told me ‘no’.”
Two weeks later Sam received notice from the NDIA that Sophie would receive a set amount of base funding.
Sophie’s parents also decided to apply for some equipment that her preschool had recommended for use at home. The NDIA said they needed an Occupational Therapist’s report before they could assess her need for the equipment.
“The OT report cost $170 and then the NDIA said ‘no’ to everything.
“It was another hoop we had to jump through and we ended up spending another $170 we didn’t really have.
“What happens to people who can’t scrape the money together you need to pay for those reports?
“It is so emotional, so raw to go through.”